I will only be following up on the words you are going to read below.
I woke up this morning, and after taking care of the usual necessities that any morning brings, such as coffee and engaging the brain, I had a look on Living with Idiopathic Stenosis, only to find these amazing words, despite them being a sort of vent. But, please see for yourselves:
Long post alert: Are we too strong? The more of our stories I read, the more I wonder if what we have in common is that we are too strong! Does the disease condition us to make struggle seem “normal,” and keeping a stiff upper lip a way of life? Last spring my airway got down to 5mm. A couple of times it “collapsed” a bit and I lost some ground quickly. Mostly, it was slow decline. Less strength, more time using oxygen night and day. Until finally at 3 a.m. I signed on here and “vented” about my fatigue, wheezing, struggling to walk part way across a room. Many of you responded with support and concern saying, “Get to a doctor!” Duh! I was headed for my third dilation. You would think I would KNOW! Having moved to a new area where there are NO doctors who treat TS was also a stumbling block. But a group member shared info about great Dr. in a neighboring state. I was wheeled in for dilation #3 on oxygen and sounding like Darth Vader. Life saved yet again. Partially (ok, a lot) by this group! No thanks at all to strength. In weakness, I spoke up, accepted help and got truly strong! Naturally, we also compare notes about how soon we did what after which procedure. Trying to figure out how much is too much, too soon in a nanosecond world. If insurance companies had their way, patients would be back on the street 2 hours after open heart surgery. Surgeons sometimes like to think they have “fixed” us permanently, or at least for the time being. But all of the procedures and surgeries are an assault on the body, mind and soul. Knives, drugs, bronchoscopes and balloons, etc. I think our bodies need time to recover from the assault, the anesthetic, the anxiety and the trauma. But, we try to be strong. To work, to run, swim, be wives, mothers, daughters, sisters, friends, neighbors, employees and grandmothers. Good for us. But I am trying to learn to be kinder to myself, and more patient with my recovery times and limitations. The first dilation, my doctor very briefly opened my trachea to 18 mm (still short of female normal of 19-21). Now, it only opens to 14-15 at best. Like it or not, my airway is compromised, and that limits how fast I can go and how much I can do. Leads me to wonder: Is being strong both a blessing and a curse?
This was my reply, one of many comments received to this post:
Karen I am in awe of your words and how true they are. I so agree – it is a blessing and a curse. A blessing because that is what we need to go through this and a curse because it makes us reckless to ourselves. I know very well how it feels – being back at work so soon where I should be at home. Having to carry responsibility for all when I should be for me, should be looked after. It makes me cry thinking, how, at the end of the day, we are alone with this. If it wasn’t for this group I think I, like probably very many of us, would be is such misery and despair. Thank you for this post and your openness and being part of this group, even though I wish with all my heart you, no one, would have to be. Sending you hugs xx
Yes, we are too strong. Thinking about it, it is more a curse and a blessing. But I think many people in chronic illness have that characteristic, not just us, who battle with ISS. As I have mentioned in the past, all we want is normality. A normality we will never again get back to. And I guess that makes us too strong, too unkind and reckless to ourselves. What’s worse, because we appear so normal in general, it is difficult to make others see our struggle. And it can make us feel embarrassed when we notice we ‘cannot keep pace‘, be it in direct physical activity or the for others unnecessary recovery, though ever vital to us. And not just the recovery after the operation. We are ashamed of asking for help, because up until the day ISS had taken hold, we were able to lead the most normal of lives. So many of us have experienced the “joys” of not being able to make the bed without panting, having to sit down to catch our breaths. Seemingly healthy individuals not being able to carry out even the simplest of tasks. My highlight, or should I say low point came when an elderly man overtook me with his walking frame – when I was a mere 24 years old. How screwed up is that if you think about it?
But we push anyway. Sometimes too much. This ‘too much‘ doesn’t necessarily have a grave physical impact, however the mental and emotional trauma is probably even greater for it. At least I think so. Yes, the body can recover, and thankfully, mostly it does. But the psyche is a totally different kettle of fish. Because we know what it was like before, and we know it will never be the same again.
Are we too strong? Yes, we are. But in that strength also lies support and compassion towards others in battle with this, or other conditions. I guess, as Karen had stated, we have to learn to be kind to ourselves and more patient with our limitations, as frustrating as it may be. If we feel weak, we can come to our groups, whatever these may be, to vent, to get support and compassion, such as I received from one of many amazing women on one of my posts not too long ago, as you will see, due to my vocal issues which are currently the greatest problem for me.
I am so sorry to hear you are so down at the moment, but I am not surprise. When you told me your story I was in awe of your strength of character to deal with all you have had to. I can’t begin to imagine what you are going through with your voice issue as I am with Fay at the Darth Vader stage still. But I look at it like this, I believe we all have a little pot of inner strength inside of us and it’s there for us to dib into when we need but unfortunately you dear Stefanie have had to dib into it more than most so it maybe a little low on juice at the moment. I have heard taking extra time to be good to yourself helps, perhaps a holiday or a massage or just some well deserved you time. Please don’t be afraid that things won’t get better remember you were Darth Vader too once but look at how many Jedi’s you have had to beat to get this far! Remember look back and see just how far you have come and never be hard on yourself for crying you are just re filling your strength pot back up
I am not going to lie- It is going to take a while to work with it. I could not speak but a whisper for 5 months. Now, well, I sound like an 80 yr-old chain smoker. It has been two years, and I still cry in private, on certain days. I try and tell myself that what counts most is that I can breathe again, despite how I sound. My life has changed for the better and for the worse. I think I am okay on the days when no one asks me what happened to my voice, or ask if I have a cold. I am very angry about my voice but also very happy that I can breathe like I never have and am able to do things (physical activity) with full force. Therapy and talking to someone helps, if you can go that route. Feel free to private message me when you have a bad day. I do not want to sugar coat this for you, only because I am living it on a daily basis. I hope you feel better, and get some comfort.
I am grateful to be a member of a support group such as this, to be able to vent, and read some words which do give you the sense of regaining strength, because you see you are not alone, that all other’s with this (or any) disease face similar or same issues. But how I wish we didn’t have to be part of them… That we wouldn’t put it upon ourselves to need to be too strong. To just have things back to the way they used to be.